Life after prostate cancer: A systematic literature review and thematic synthesis of the post‐treatment experiences of Black African and Black Caribbean men

Evidence shows that there are significant ethnic variations in prostate cancer prevalence and outcomes. Specifically, Black African and Black Caribbean men may encounter different post‐treatment experiences than Caucasian men due to their disproportionately higher risk of being diagnosed with advanced prostate cancer. But to date, no review of these experiences has been undertaken. This review synthesised findings from existing literature on the post‐treatment experiences of Black African and Black Caribbean men with prostate cancer and identified pertinent issues which may be useful to inform practice and future research. Seven databases were systematically searched using developed search terms. Four qualitative studies were identified and critically appraised. Findings are summarised under four main themes: symptom experience, healthcare experience, marital and social relationships and coping strategies. Cultural definitions of masculinity influenced the meanings men gave to their post‐treatment experiences. While men's experiences of healthcare varied, the provision of professional support to address their post‐treatment distress was lacking. Men derived most support from wives, peers and church communities. A culturally sensitive approach which recognises diversity among Black African and Black Caribbean populations and treats individuals within their religious and socio‐cultural contexts could potentially improve men's post‐treatment experiences. Areas for further research were also identified.     

‘It's hard to take because I am a man's man’: an ethnographic exploration of cancer and masculinity

CECIL R., Mc CAUGHAN E. & PARAHOO K. (2010) European Journal of Cancer Care
‘It's hard to take because I am a man's man’: an ethnographic exploration of cancer and masculinity This paper reports on a study into male participation in cancer support groups, which elicited data on the impact of cancer on masculinities. This small qualitative pilot study, which took place in Belfast in Northern Ireland, involved semi‐structured interviews with eight men with a history of cancer who were no longer being actively treated (i.e. they were not receiving chemotherapy or radiotherapy), and who were proficient in spoken and written English. Whereas most studies into men with cancer that have looked at issues of masculinity have been on prostate and/or testicular cancer and have tended to focus upon sexual ability and activity, this study identified more sociological issues of concern that also present challenges to masculinity and to male identity. Economic concerns were identified as being major issues for men, as were their changing role vis‐à‐vis their family, friends and colleagues, and changes to their body and to their body image. The findings from this study indicate that cancer support services need to be gender sensitive in order to ensure that interventions do not undermine masculine values but address men's concerns and foster their positive coping strategies.     

Radiologist participation in multi‐disciplinary teams in breast cancer improves reflective practice,decision making and isolation

This study aims to explore Australian radiologists' experiences of participating in breast cancer multi‐disciplinary team (MDT) meetings to identify enablers and barriers to participation as well their perception of confidence and patient care. Qualitative methods incorporating observation and interviews were used. Twenty‐one breast cancer MDT meetings were observed across Sydney to study the dynamics of the meetings, the level of participation by radiologists and their most important interactions. Qualitative semi‐structured interviews were conducted with 10 radiologists participating in these meetings regarding participation, educational opportunities and improvements to work practices. Radiologists' participation in breast cancer MDT meetings is influenced by the type of meeting they attend with higher levels of participation and a more dominant ‘valued’ role being evident in pre‐interventional meetings. The key themes to emerge from the data include the importance of ‘sharing experiences’, the ‘radiologist–pathologist relationship’ and the value of ‘continuing participation’. Radiologists believed their confidence in their clinical decision making increased when there was immediate feedback from pathologists. This study highlights the benefits of radiologists regularly participating in breast cancer MDT meetings in terms of continuing professional education resulting from collegial experiential learning. Radiologists' perceived patient care and workplace isolation were improved by sharing experiences with other cancer care colleagues.     

Experiencing one's body after a diagnosis of cancer—a phenomenological study of young adults

Young adults with cancer are still in the process of shaping their lives and are therefore at a vulnerable stage. Altered body image may change how patients cope with the disease and impact rehabilitation capacity. Objective: To describe the essence of how young adults with cancer experience their bodies. Methods: Interviews (12 informants), transcribed verbatim. Analysis: Giorgi's phenomenological method. Results: Identified themes: experience of ‘physical body change’, ‘discomfort’, ‘the body at the moment without reflecting on the disease and treatment’, ‘body image’ and ‘grasping the illness’. Essences: The body as the bearer of life; conflict between age and disease; manifest changes in appearance, physically and mentally; the body no longer a whole; the body as influenceable and able to recover and heal. Conclusions: These patients undergo physical and mental changes that affect their self‐image and health‐related life quality. Thus, future studies need to explore interventions that may enhance the individual? perception of their body. Copyright © 2009 John Wiley & Sons, Ltd.     

Examining Cultural Factors that Influence Treatment Decisions: a Pilot Study of Latino Men with Cancer

The objective of this study was to explore beliefs and treatment decisions of foreign-born Latino men from Cuba, Mexico, Colombia, and Venezuela, who have been diagnosed with cancer and who live in Central Florida, USA. Experiences related to knowledge of diagnosis, treatment decisions, communication with health providers, family involvement, and advance care planning (ACP) discussions following the diagnosis of cancer are central to this study. This study used qualitative in-depth semi-structured interviews and thematic analysis. The interviews were conducted with 15 Latino men who have been diagnosed with cancer within the past 5 years and who reside in the community. The interviews were conducted and transcribed in Spanish and then translated into English. The median age was 55.4 years. Nine Latino men had prostate cancer, two had brain cancer, two had colorectal cancer, and two had lung cancer. Emerging themes involved the suddenness of the diagnosis, fear of dying, expectations of diagnosis-related communication, reliance on physicians for treatment decisions, limited information pertaining to ACP, family support, and role changes. Latino men's limited knowledge of cancer diagnosis and treatment options coupled with their fear led them to immediately believe that they were going to die. Knowledge gaps regarding diagnosis-related communication, treatment decisions, and ACP varied among the men. The forthright diagnosis communication and the expectation to engage in decision making are contrary to Latinos men's beliefs of reliance on health providers decisions. The findings contribute to understanding Latino men's beliefs about a cancer diagnosis and treatment decisions.     

Reflections from Women with an Interval Breast Cancer Diagnosis: A Qualitative Analysis of Open Disclosure in the BreastScreen Western Australia Program

Background: ‘Interval breast cancer’ describes a malignancy that is diagnosed after a negative screening mammogram. Open disclosure is a process of addressing a negative health outcome that includes an apology and an opportunity for the client to discuss concerns. BreastScreen Western Australia has implemented a policy of open disclosure. The purpose of this study was to gain an understanding of clients’ experience with interval cancer and their attitude towards the screening programme by conducting a thematic analysis of written responses from women participating in the open disclosure process. Methods: Women experiencing an interval cancer diagnosis between 2011 and 2020 were sent a questionnaire by mail. It included two broad questions with free-text responses. A qualitative analysis of the responses was conducted using an inductive approach. Responses were de-identified and data were thematically analysed and presented using verbatim quotations. Results: Five themes emerged in response to “what could we have done better?”: ‘nothing,’ ‘broaden scope,’ ‘service delivery,’ ‘breast density education’ and ‘more education’ generally. Six themes emerged in response to “what did we do well?”: ‘staffing,’ ‘overall satisfaction,’ ‘reminders,’ ‘follow-up after interval cancer,’ ‘efficiency’ and ‘information and education provision.’ An additional theme of ‘storytelling’ emerged from both questions: an opportunity for the woman to share her experience of cancer. Conclusion: Most women expressed positive attitudes towards the service and appreciated giving feedback in the open disclosure process. Several themes supporting the role of BreastScreen in education were identified, including providing information about breast density, breast health, and limitations of screening.     

Exploring and comparing the experience and coping behaviour of men and women with colorectal cancer after chemotherapy treatment: a qualitative longitudinal study

Objectives: Men have higher incidence and mortality rates for nearly all cancers. They are less likely than women to utilise cancer information services and other social support services. The aim of this study was to explore and compare the experience and coping behaviour of men and women after treatment for colorectal cancer (CRC). Methods: A longitudinal qualitative study was conducted involving 38 individuals (24 men and 14 women) with CRC. Data were generated using semi‐structured interviews at four time points over an 18‐month period, post‐diagnosis. Interviews focused on participant's experience of CRC and on how gender affected their coping. This paper reports the findings of interviews 3 and 4 which examined the participant's experience after chemotherapy. Results: Three themes emerged from the interviews (‘new normal’, living with uncertainty and support needs). Many men and women reacted similarly; however, there was some variation evident between and within sexes. The main difference was with regard to the long‐term physical side effects of the illness. Many women admitted to still experiencing side effects, whereas many men indicated that they had no problems. These men engaged in practices that aligned with their gender identity and view of masculinity. It must be noted that some men and women were still experiencing an impact. Conclusions: Recovery from the physical and psychological effects of CRC does not occur simultaneously. Healthcare professionals should be aware that not all men (or women) conform to the social stereotypes of masculinity (or femininity). Copyright © 2010 John Wiley & Sons, Ltd.     

‘Someone to hold the hand over me’: the significance of transpersonal ‘attachment’ relationships of Danish cancer survivors

The aim of this article is to present findings about self‐reported spirituality of a group of Danish cancer survivors. The findings derive from a qualitative study that was carried out during rehabilitation week courses at a Danish rehabilitation centre. Methods comprised participant observation, semi‐structured interviews and focus group interviews. Employing interpretative phenomenological analysis as analytical strategy, a prominent part of the informants’ self‐reported spirituality was found to centre around a perceived sense of relatedness to a transpersonal entity that transcends the self and extends beyond spatial‐temporal boundaries. Three transpersonal entities were identified: ‘God’, a ‘guardian angel’ and a ‘deceased family member’. The key findings of the study demonstrate that the transpersonal entities were experienced as empowering and supportive resources during cancer treatment and rehabilitation and that they were furthermore perceived as responsible for the informants’ healing and survival. These findings are interpreted through the lenses of two interrelated theoretical frameworks: Hay and Nye's approach to spirituality as ‘relational consciousness’ and Kirkpatrick and colleagues’ understanding of religion and/or spirituality as attachment relationships. These two theoretical understandings are suggested as useful frameworks for capturing spiritual dimensions of cancer survivors’ meaning making and coping in a secular society.     

‘Swimming against the tide’– the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer

CRAWSHAW M.A. & SLOPER P. (2010) European Journal of Cancer Care ‘Swimming against the tide’– the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer Psychosocial research into cancer‐related fertility has concentrated on fertility preservation or adult survivors' concerns. This study reports on its hitherto unreported impact over the time from diagnosis to survivorship. Thirty‐eight men and women aged <30, diagnosed as teens, were recruited to an exploratory qualitative study. Analysis used the constant comparison method, considered conceptually within a lifespan approach. Four key experiences of managing fertility matters influenced, or were influenced by, the aftermath of cancer treatment: (1) prioritising ‘normality’ and marginalising fertility; (2) fertility concerns compromising ‘normality’; (3) ongoing impairments/health concerns mediating fertility matters; (4) fertility concerns dominating the cancer legacy. Professional and social networks provided few opportunities to ask questions, receive information, process feelings or develop handling strategies. Beliefs about the extent of fertility damage did not necessarily relate to information received. For some, fertility matters affected identity, well‐being and life planning as well as reproductive function. This was not restricted to particular ages, life stages, gender or time since treatment ended and was heightened by associated stigma and silence. Opportunities for dialogue should be offered regularly across health and social work disciplines given fertility's psychological and social as well as medical significance.     

Life experiences of caregivers of women with gynaecological cancer: a mixed‐methods systematic review

Family caregivers play a key role in meeting care needs of cancer patients. The aim of this review was to systematically examine life experiences of family caregivers of women with gynaecological cancer. A mixed‐methods systematic review based on a retrospective review of the research on the topic was conducted. The review was limited to articles in English published between 1985 and 2014. The literature search was performed in CINAHL, Scopus, PubMed and ScienceDirect. A total of 16 full‐text articles published in national and international journals were reviewed: 10 quantitative studies, 5 qualitative studies and 1 both qualitative and quantitative study. Of all caregivers with gynaecological cancer, 59% were partners, 27% were sons or daughters and 14% were brothers or sisters, mothers and friends. The qualitative research on caregivers’ experiences revealed three themes: ‘emotional devastation’, ‘change’ and ‘coping’. The family caregivers of women with gynaecological cancer had difficulty in areas examined, but the studies investigating caregivers’ needs were limited to certain subjects and they were not solution‐oriented. It is recommended that qualitative and quantitative studies including the solutions regarding family caregivers of women with gynaecological cancer should be integrated.     

Insights into hospitalisation of advanced cancer patients: a study of medical records

The aim of this study was to explore reasons for the hospitalisation and place of death outcomes of terminal cancer patients. The methodology involved a qualitative content analysis of medical records pertaining to the last 3 months of life of 39 patients with one of four malignancies: prostate, breast, lung, or haematological. The results presentation is organised around three themes: decision hierarchy in health care, meanings of ‘home’, and late recognition of dying. Based on the detailed findings, this paper suggests that important insights into the broader goals of advanced cancer patients are offered by allied health staff, and that more effective use of the multidisciplinary team may support endeavours to achieve more home deaths for cancer patients who want this outcome. The analysis also provides new insights into the meaning of ‘home’ in interactions between advanced cancer patients and health professionals. The wish for ‘home’ appears bound up with other patient goals and the implications of this are discussed.     

Embracing life after prostate cancer. A male perspective on treatment and rehabilitation

This study explores prostate cancer patients' experiences of rehabilitation after radiotherapy with androgen deprivation therapy (ADT). Patients who had completed a multidisciplinary rehabilitation programme with psychosocial support and physiotherapy were interviewed in two focus groups: Group 1 consisted of six men who came to the rehabilitation with their spouses, and Group 2 of seven men who came alone. Meaning condensation was used to analyse the interviews. Radiotherapy was described as full‐time work. Adverse effects due to ADT influencing masculinity and identity were emphasised. The men embraced life with a particular sense of humour. Whether rehabilitation was experienced as useful depended on the health professionals' approach, and on the patients' motivation and effort to contribute to health promotion, and to convert experiences into coping strategies. The supportive role of the spouse was emphasised by several, but some men preferred to handle the process alone. In conclusion, men undergoing ADT should be carefully informed of the consequences. Spousal involvement in rehabilitation must be decided by the patient. The focus group interviews themselves had a positive impact on the men's understanding of their rehabilitation processes. The specific male approach and differences between the needs of female and male cancer patients are important to understand when planning rehabilitation.     

Religious faith in coping with terminal cancer: what is the nursing experience?

This qualitative study describes nurses’ reports on the role played by religious faith in the care of patients with terminal cancer. Using Gadamer's philosophical hermeneutics and C. Roy's adaptation model as a base, in‐depth interviews were carried out with 23 nurses who had cared for patients with terminal cancer for at least 6 months. Three main themes emerged when a Gadamerian‐based hermeneutic research method was applied: faith facilitates the coping process in cases of terminal cancer, faith hinders the coping process in cases of terminal cancer and terminal illness impacts faith. The lack of univocal results indicates that the role of faith in coping with death is essentially practical, individualised and changeable. The nurse–patient relationship can help to determine the spiritual needs of cancer patients at the end of life. This source of knowledge held by the nurse, together with the rest of the multidisciplinary team, can help to improve end‐of‐life care.     

Barriers and facilitators towards fertility preservation care for cancer patients: a meta‐synthesis

Infertility is a potential late‐effect of cancer treatment, which negatively impact on young cancer survivors' quality of life. This paper aims to synthesise factors that influence patients', carers’ and healthcare professionals’ decision to engage in fertility preservation programmes at the time of cancer diagnosis. Four databases and grey literature were systematically searched to identify qualitative and mixed‐method studies published between 2000 and 2015. Thematic framework and synthesis were used to analyse and synthesise the data. Thirty‐seven papers were selected and represented. Factors that affect engagement of patients, carers and healthcare providers in fertility preservation care can be grouped as intrinsic and extrinsic. Intrinsic factors include patients' attitudes, health beliefs and health literacy; clinicians’ approaches and skills; as well as doctor–patient relationships. Extrinsic factors include fertility preservation care resources and institutional characteristics. We conclude that existing qualitative literature highlights the complex convergences of intrinsic and extrinsic factors that impede successful engagement in fertility preservation care. Addressing these factors could help cancer survivors achieve better health outcomes and improve their wellbeing. Potential solutions include attitudinal changes and organisational skill reforms across the health community that will help ensure a person's goals are always at the centre of their cancer care.     

Connecting humor,health, and masculinities at prostate cancer support groups

Objective: Many commentaries about men's health practices and masculinities indicate that men do not typically engage with self‐health or acknowledge illness, let alone openly discuss their health concerns with other men. Prostate cancer support groups (PCSGs) appear to run contrary to such ideals, yet the factors that influence men's attendance and engagement at group meetings are poorly understood. As part of a larger PCSG study, we noticed that humor was central to many group interactions and this prompted us to examine the connections between humor, health, and masculinities. Methods: A qualitative ethnographic design was used to direct fieldwork and conduct participant observations at the meetings of 16 PCSGs in British Columbia, Canada. Individual semi‐structured interviews were completed with 54 men who attended PCSGs to better understand their perceptions about the use of humor at group meetings. Results: Four themes, disarming stoicism, marking the boundaries, rekindling and reformulating men's sexuality, and when humor goes south were drawn from the analyses. Overall, humor was used to promote inclusiveness, mark the boundaries for providing and receiving mutual help, and develop masculine group norms around men's sexuality. Although there were many benefits to humor there were also some instances when well‐intended banter caused discomfort for attendees. Conclusions: The importance of group leadership was central to preserving the benefits of humor, and the specificities of how humor is used at PCSGs may provide direction for clinical practice and the design of future community‐based men's health promotion programs. Copyright © 2009 John Wiley & Sons, Ltd.     

Disentangling cancer patients' trust in their oncologist: a qualitative study

Objective: Patients' trust in their physician is crucial for an optimal treatment. Yet, among oncology patients, for whom trust might be especially important, research into trust is limited. A qualitative interview study was carried out to investigate (1) to what extent aspects of trust important to cancer patients reflect the aspects described in other patient populations and (2) which additional themes emerge. Methods: In‐depth, semi‐structured interviews were performed with a purposefully selected heterogeneous sample of 29 cancer patients. Transcribed interviews were analyzed using MAXqda. Data were clustered across interviews to derive common themes related to trust. Results: Three commonly described aspects, i.e., fidelity, competence and honesty, were strongly reflected in patients' accounts of trust in their oncologist. Confidentiality was irrelevant to many. An additional aspect, labeled ‘caring’, was distinguished. Central to the accounts of these patients was their need to trust the oncologist, arising from the severe and life‐threatening nature of their disease. This necessity to trust led to the quick establishment of a competence‐based trust alliance. A deeper, more emotional bond of trust was developed only after repeated interaction and seemed primarily based on the oncologist's interpersonal skills. Conclusions: The need for trust encountered in this study underscores the power imbalance between cancer patients and their oncologist. Additionally, these results imply that when aiming to measure cancer patients' trust, what we might actually be assessing is patients' intention and determination to trust their oncologist. Copyright © 2011 John Wiley & Sons, Ltd.     

Sustaining hope and life courage in patients undergoing ovarian cancer surgery – the impact of care

Ovarian cancer is the leading cause of death from a gynaecological malignancy in the Western World. To explore if experiences of physical comfort influenced hope and life courage during final diagnosis and early treatment, qualitative research interviews were performed with women undergoing surgery for ovarian cancer. By applying a phenomenological‐hermeneutic methodology, the findings were systematically identified, put into meaning‐structures, interpreted and critically discussed. The empirical material constituted a main theme concerning “Hope and life courage are created in the interplay between body and mind,” where findings dealt with personal reflections and experiences in relation to the subthemes: “Experiencing discomfort,” “The impact of care” and “Comfort and hope.” The women's general health condition became impacted not only by their ovarian cancer disease but also by the treatment, and it was a main finding that sufficient symptom management combined with sensitive attention of the patient sustained her hope, life courage and action competences. Surgery constitutes an essential part of sufficient cancer treatment. However, the diagnostic and pre‐operative phase represents an insufficiently investigated area in cancer care. Improvements are therefore vital to reduce the disease burden, and improve patients' general health and quality of life, during and after treatment.